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Cancer misinformation on TikTok could be harmful to women’s health, says study

The quality of the information being shared through the social media platform is poor and inaccurate, scientists argue

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Millions of women are turning to TikTok for health advice related to gynaecologic cancers, but the majority of that information is misleading or dramatically inaccurate, new research has shown.

The study, published by The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute, has found that overall, the quality of the information being shared through TikTok was poor.

This highlights the power of social media to feed misinformation that could be harmful to patient health outcomes, senior study author Laura Chambers has said, but it also presents an opportunity to address gaps less likely to come up during a clinic appointment.

Chambers, an osteopathic physician at the at the OSUCCC – James, was interested in learning more about the unspoken concerns of her patients, who are often mothers and young women.

She wanted to understand how these people were using social media, what information they were sharing and how they are consuming that information.

“The intent of this study was to understand the needs of patients that may go unspoken in the clinic but represent gaps in care that need addressed,” she explained.

“As doctors, we are focused on treatment toxicities and patient outcomes, but many of our patients are navigating really difficult challenges at home like figuring out how to show their child love and attention when they are going through fatiguing treatments.”

For this new study, Chambers and her team systematically searched for the 500 most popular TikTok posts and analysed the top five hashtags for each related to gynaecologic cancer (ovarian, endometrial, cervical and vulvar cancers, as well as gestational trophoblastic disease) for key themes, quality of information and reliability of gynaecologic cancer-related content on TikTok.

Demographic information, message tone and thematic topics were collected. Educational videos were rated for quality using an established health education information scale.

As of August 2022, the top five hashtags for each gynaecologic cancer had more than 466 million views.

The researchers found that at least 73 per cent of content shared on TikTok was inaccurate and of poor educational quality and that racial disparities extended into this social media space.

“This data inspired a lot of questions about where to go next in addressing these inaccuracies and communicating with patients directly, especially focusing on opportunities to create more diverse content to overcome racial and cultural disparities related to treatment of these cancers,” said Chambers.

“The vulnerability shown in social media content around personal cancer journeys is inspiring, but this data really encourages us to ask, as a medical community, how we can provide a care environment that encourages that kind of trust and real conversation with patients? And what can we do, as a broader community, to provide quality health information and support services to patients seeking information about gynaecologic cancers?”

Chambers encourages patients who desire a community of like-minded people going through similar experiences to seek out in-person and online support communities sponsored by reputable medical and patient advocacy organisations.

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New survey to ‘amplify’ marginalised voices in healthcare decision-making

UK charities enter partnership to address gender gap and advocate for inclusive healthcare policies

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The gynaecological health charity Cysters and Endometriosis UK have announced a partnership to amplify women’s voice in healthcare decision-making.

Despite progress in healthcare data collection, there remains a gap in representing the experiences of marginalised groups, particularly for those impacted by conditions and diseases like endometriosis.

Decision-makers in Parliament and the NHS often rely on data and statistics to inform policy and resource allocation. However, these datasets may not accurately reflect the experiences of marginalised communities.

A recent report from Endometriosis UK that gathered data on the experiences of being diagnosed with endometriosis in the UK found that whilst the ethnicity of respondents who identified as ‘white’ was proportionate to the data collected in the Census 2021, the remaining data was not illustrative of the ethnic diversity of the UK, with 15 per cent of respondents choosing not to respond to the ethnicity question.

To address this gap and advocate for inclusive healthcare policies, Cysters and Endometriosis UK are launching a new survey initiative aimed at amplifying the voices of marginalised groups in healthcare decision-making.

“We know that the current statistics are not inclusive of all communities, particularly marginalised groups,” said Neelam Heera-Shergill, founder of Cysters.

“By encouraging those from marginalised communities to share their experiences through this survey, they will be helping us to advocate for the changes that are needed, backed by evidence from their communities.

“In addition to delving into the diagnosis journey for people of colour and the unique barriers they encounter. We aim for this research and findings to pave the way for additional funded research on all menstrual-related conditions affecting people of colour.”

The survey seeks to gather insights into the experiences of marginalised communities, particularly concerning conditions and diseases like endometriosis.

Participants are encouraged to share their experiences openly and honestly, knowing that their responses will contribute to shaping more inclusive healthcare policies.

Sarah Harris, a researcher at Cysters, said: “We urge everyone to participate in this survey and share it far and wide. Together, we can ensure that all voices are considered in the conversation surrounding healthcare policy and resource allocation.”

The survey is anonymous and takes approximately 15 minutes to complete. To participate, visit Delayed Diagnosis of Endometriosis Among People of Colour in the UK Survey.

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Menstrual care start-up launches period equity initiative across college campuses

The initiative is hoped to facilitate access to period care and educate students on the use of more sustainable products

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Cherie Hoeger, founder and CEO of Saalt

The US menstrual care start-up Saalt has launched a new initiative aimed at addressing period poverty and environmental sustainability.

The Period Equity Initiative aims to reduce 100 million tampons from the environment while combatting period poverty.

Institutions, including Harvard University, Vanderbilt University, Northwestern University, the University of Utah and the University of Nebraska, are already participating in the programme.

One in five female college students in the US have had to decide between buying period products and paying for other basic essentials like food and other bills according to a nationwide survey.

The initiative, a direct response to the demand for more units for student populations, underscores the issue of period poverty, which affects students across America, challenging the misconception that it is solely an “overseas problem”.

Saalt aims to make period care accessible and affordable through the subsidisation of reusable period products, such as cups, discs, and period underwear, to participating universities and their campus affiliates.

The project is hoped to not only facilitate access to period care, but also educate students on the use of more sustainable products, which are designed to be reused rather than discarded.

“Every day we hear from customers about how life-changing Saalt cups are for them,” said Cherie Hoeger, founder and CEO of Saalt.

“Creating period equity and managing the environmental impact created by disposables are pressing matters that demand urgent attention and innovative solutions.

“Through our Period Equity Initiative, we’re taking a proactive approach to tackle these challenges by leveraging our expertise and aligning with universities across America to make a big impact closer to home.”

The Period Equity Initiative, Hoeger added, furthers Saalt’s commitment to making period care more affordable, accessible and sustainable.

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Medical device start-up enters partnership with Bayer Switzerland

The collaboration is hoped to help “transform” gynaecological examinations

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The medical device start-up Aspivix has announced a partnership with Bayer Switzerland in an effort to “modernise” gynaecological procedures.

Aspivix has developed an innovative, suction-based cervical device designed as an alternative to the tenaculum, a surgical instrument commonly used in gynaecology for over a century.

The device aims to reduce pain and bleeding during transcervical procedures, including IUD placement.

Through the partnership with Bayer, Aspivix is now officially introducing Carevix in an effort to “transform” gynaecological examinations.

The collaboration is hoped to help bring the tool to market and offer women a more comfortable gynaecological experience, reducing the cases of pain associated with IUD procedures.

“We are excited to enter this partnership with Bayer (Schweiz) AG that truly emphasise the goal of empowering women to select the best contraceptive solution without worrying about potential pain and bleeding,” said Mathieu Horras, co-founder and CEO of Aspivix.

“The thorough research and clinical data behind Carevix guarantee a notable decrease in pain and bleeding, enhancing the experience of IUD adoption and placement, as well as various other gynaecological procedures for millions of women.”

The device, Horras added, provides an appealing alternative to the currently available tenaculum, filling an “important” unmet need.

Marco Gierten, Bayer Switzerland women’s healthcare lead, said: “As a globally trusted brand, Bayer remains committed to advancing solutions that provide significant benefits to patients.”

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